6 posts tagged “MS symptoms”

Staying mobile with assistive walking devices: Member Cathy weighs in

Posted July 23rd, 2018 by

Do you have difficulty walking or getting around? Have you considered using a wheelchair, walker or cane? Making the decision to use a walking or mobility aid can be difficult. You’re not alone. Here, PatientsLikeMe member Cathy living with multiple sclerosis shares about how she overcame the fear of losing her independence and how using a cane is helping her “live the kind of life we all deserve.”

When you’re first diagnosed with multiple sclerosis, it’s typical to have questions and concerns that are overwhelming and cause great anxiety. In the age of “fake news,” this anxiety increases when we’re bombarded with television programs that characterize disability as a downward slide. It doesn’t have to be this way. A positive attitude and a bit of determination can help us live the kind of life we all deserve.

One of the greatest fears for many after being diagnosed is if MS will progress to the point of losing our independence. After enjoying a life of self-reliance, the thought of depending on assistive walking devices such as canes, walkers, scooters or wheelchairs is frightening.

I was twenty-eight years old when I was diagnosed. My legs and hands were weak and numb, and my balance was so bad that an ignorant passerby accused me of being drunk. I refused to consider using a cane. I remember taking a walk with my father, his legs twice as long as mine, and trying to keep up with his pace. It was a losing battle. When we crossed the street he threw his long arm out in front of me like a crossing guard, silently knowing how slowly I walked and how long it’d take to cross the street. I’m sure his heart was heavy, and being with him at that moment, my heart was heavy, too.

On accepting a new normal

I was experiencing debilitating MS fatigue, so refusing to use a cane only increased the exhaustion. Later, I learned that favoring a strong leg over a weaker one is not only tiring but also increases the chance of falling and being injured. I had to end my stubbornness for safety’s sake.

I learned that lesson the day I walked through a crowded restaurant and my legs buckled under me. I fell hard on the wooden floor and my friends helped me to my feet. Patrons all around us glared and I was completely mortified. It was at that moment I admitted to needing help.

My friend Abi Budd has a similar story. It took her awhile to come to terms with using a mobility scooter. She struggled with walking and became terrified of her inability to go from one place to another without falling. Her denial was affecting her lifestyle, but her determination and positive attitude led to acceptance; a chair would help her regain the freedom she once knew. She has an infectious attitude.

The same is true for another friend, Debbie Petrina. She doesn’t allow her MS to stop her but embraces the use of assistive walking devices to give her the freedom she desires. “Through the years, assistive devices have allowed me to be less fatigued, elevating my moods and enabling me to do more. I didn’t overheat as fast since I struggled less in trying to walk.”

Learning to accept your new circumstances and relying on assistive devices is a surefire way to live the best life possible. I’m not saying it’s always easy, I’m just saying it’s worth it.

Cathy’s picks: Helpful resources

Do you use a cane or other type of mobility aid? How and when did you make the decision to start using one? Join PatientsLikeMe and share your experience with the community.

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Marijuana and MS: Get the scoop

Posted October 23rd, 2017 by

From legality to availability, recreational use and potential use as treatment, marijuana is a hot topic. In the MS forum, members are talking about marijuana and its potential to relieve symptoms of MS like pain, tremor and spasticity. We wanted to know more, so we asked our Health Data Integrity team to take a look at this topic. So, what is marijuana and how can it impact health and MS? Take a look.

Marijuana and MS: Get the scoop

First, a quick refresher: What is Marijuana?

Marijuana is a mixture of dried flowers from the Cannabis sativa or Cannabis indica plants. The marijuana plant contains over 85 cannabinoids that are found in the leaves and buds of the female plant. Cannabinoids are classified as:

  • Phytocannabinoids: found in leaves, flowers, stems, and seeds of the plant.
  • Endogenous: made by the human body.
  • Purified: naturally occurring and purified from plant sources.
  • Synthetic: synthesized in a lab.

Cannabinoids create different effects depending on which receptors they bind to. These chemical compounds are responsible for marijuana’s effects on the body with the most common being delta-9-tetrahydrocannabinol (THC) and cannabidiol (CBD). Different strains with different combinations and levels of the various cannabinoids along with different methods of consumption give users varied effects.

How does marijuana impact MS?

Despite currently available FDA-approved treatments, many patients with MS still have symptoms. Recent studies suggest treatment with smoked cannabis and oral cannabis extract may improve patient perception of pain and spasticity.

The American Academy of Neurology, conducted a literature review and released a guideline on the use of marijuana in MS patients. This guideline reviews a number of studies where marijuana is used for MS and the findings of this review include:

  • Oral cannabis extract and synthetic THC may be effective for reducing patient-reported symptoms of spasticity and pain, but not bladder symptoms and neuropathic pain.
  • Nabiximols (Sativex®), an oromucosal spray, may be effective in reducing patient-reported spasticity, pain, and urinary frequency, but not urinary incontinence, anxiety symptoms, sleep problems, cognitive symptoms, or fatigue. However, it is important to note that this agent is not currently approved for use in the US.
  • There isn’t enough evidence to fully determine the safety or effectiveness of smoked marijuana in treating any MS symptoms.

If you are interested in reading more studies involving the use of marijuana in MS patients, check out these resources:

  • Long term effects of Sativex® on cognition (click here for more information)
  • Smoked cannabis for spasticity (click here for more information)
  • Dronabinol and pain (click here for more information)

So, what is the takeaway?

While preliminary research shows that marijuana may improve symptoms in patients with MS, more extensive clinical trials are in progress to evaluate the safety, efficacy, and dose of cannabis for patients with MS.

One of these studies is currently recruiting participants to investigate the effects of medical marijuana usage on physical functions on MS patients. To find out if you qualify and the location of the study, click here for more information.

Long-term safety of marijuana use for symptom management for patients with MS is not fully known. So, patients should be aware of the pros and cons of this treatment option and discuss the use of medical marijuana with their healthcare provider. While there are benefits that marijuana may provide for patients, there are many side effects that may limit the use of this therapy.

Most common side effects include:

  • Dizziness
  • Drowsiness
  • Difficulty concentrating
  • Memory disturbance
  • Changes in mood

Source: https://www.drugabuse.gov/publications/drugfacts/marijuana

Want to know more?

Sources:

https://www.cancer.gov/publications/dictionaries/cancer-terms/http://www.neurology.org/content/82/12/1083.full.pdf+htmlhttps://www.leafly.com/news/health/how-marijuana-affects-the-brainhttps://www.nationalmssociety.org/Treating-MS/Complementary-Alternative-Medicines/Marijuanahttps://www.drugabuse.gov/drugs-abuse/marijuana/nih-research-marijuana-cannabinoids

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